Rick Santorum’s run for the Republican presidential nomination has brought to light a topic that is near and dear to me and my family. Like Sen. Santorum, my daughter has the genetic condition of Trisomy 18, or Edward’s Syndrome.
This condition was prenatally diagnosed, but my wife and I chose to continue the pregnancy despite the gloomy prognosis. Ninety percent of Trisomy 18 children die at or before their birth, and of those that survive, 90 percent die in their first year of life. We chose to cherish whatever life God gave to us.
I recognize that many don’t understand this decision and that there are many misconceptions about these precious children.
Much has been written recently about Trisomy 18, but the most profound statement in an online ABC News article said that survival “depends on the severity of symptoms and the quality of care.” The first part, “severity of symptoms,” is a wide range and something that cannot be changed.
Most of these children are lost despite the hopes and prayers of their parents. However, the “quality of care” is our choice. If the child survives their birth, we have to choose the amount of medical intervention we will afford this medically fragile child.
I have heard it said that Rick Santorum’s daughter, Bella, has received care because he is wealthy and privileged. This is not my experience. My family is middle class, we have private insurance through my employer, and my daughter, Rebekah, has received similar care that Bella has received. Additionally, in South Carolina, Rebekah is eligible for a type of Medicaid called TEFRA, which covers more services than our private insurance.
The truth of the matter is that Bella receives services because Rick and Karen Santorum are willing to fight for them. I did say fight. You see, Trisomy 18 children are categorized as “incompatible with life” or “a lethal diagnosis,” which many doctors and hospitals take as a license to deny care. This story is played out everyday across the United States and the world.
Like the Santorums, we are blessed to live in a community that has hospital systems and many doctors that have helped us address Rebekah’s medical concerns. Their care and interventions have enabled us to enjoy over two- and half-years of joyful life so far.
It is true that a child with Trisomy 18 faces difficult times and their family has to make hard choices about their care, but aren’t all of our lives difficult at times? Many people have told me how Rebekah’s demeanor and activities change when she hears my voice coming into the room. Not only does she recognize me, she is excited to know I am coming to see her!
If you could see Rebekah and Bella (and the numerous other Trisomy children across this country) at home with their siblings, friends (yes, friends) and favorite toys, you would see the true essence of happiness and peace. The joy Rebekah takes from life encourages us about the decisions we have made on her behalf.
My heart breaks every time I hear about a child diagnosed with Trisomy 18, because I know parents will have to make difficult choices in what are often hostile environments. Unless you have faced these choices, you have no idea what they feel like.
At these moments, it doesn’t matter what you believe morally, ethically, politically, philosophically or theologically. You must make a life or death decision. In a few hours, days, or weeks, you will have to make it again. Ultimately, you have to live with whatever choices you made.
For my wife and me, our first choice was to “cherish every kick and every moment” we had with our daughter. Almost three years later I thank God every day for how he has blessed us.
|Michael Budd lives in Simpsonville with his wife, |
Susan, and their five children.
For more information about Rebekah go to
Help is available at www.trisomyhelp.org.